Seeing life differently.

chronic illness

I posted this on Facebook earlier today, after I left the pharmacy. After a few requests to make it public so friends could share, I did—and it seemed reasonable, 12 shares, 45 reactions and 59 comments later—many shocked that this happens in Canada—to post it on my blog, too.

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Do you know why Canada needs true national Pharmacare?I do every day, but especially on days like today where I leave $642.01 behind at the pharmacy counter just to function for a month, for just 4 of my 7 meds.

Did you know that despite being self employed and having two part time jobs, I can’t get insurance in Canada that covers medication for my preexisting conditions? Okay, actually I can, but it would cover $500 in medication: less than one tenth of my annual medication costs. Less than I just paid today.

I can survive without Vyvanse for my severe ADHD, but I can’t thrive. That’s the expensive one, and it’s not an enhancer, just a sort-of equalizer.

I require four different inhalers to manage my moderate-to-severe asthma. (One of those I’m on right now isn’t covered for asthma under Manitoba Pharmacare, so I pay out of pocket. Despite how well it works, I’ll switch it for another drug in not-winter to save money.) This is to BREATHE, which is not exactly optional.

Barring other radical intervention for my fibroids, I’ll need to stay on oral contraceptives for another several decades–and this is the only drug I may have a forseeable end date on. Despite my persistence, this is not optional. (And also, even if I were using them for contraception, does the province not realize paying for the pill for a decade is cheaper than probably just getting a baby born? Never mind making them a good human?)

Oh, and on top of the asthma medicine, I have allergic rhinitis, for which I consider the drugs “the optional ones”, but only because my sinuses aren’t super impairing–note, my doctors disagree with the optional-ness of daily nasal steroids, and support the use of singulair as an add on.

I am productive and mostly healthy because I have these medicines. I’m lucky I can afford the deductible which is thrown at people like me in a lump sum at the beginning of the fiscal year. I will have another pharmacy trip or two where I leave a not-insignificant amount of money behind. Just because I can afford this now–with minimal expenses, living with my parents–doesn’t mean I’ll always be able to.

Am I happy to have some provincial coverage? Yes. Do we need to do better? Unquestionably yes.

We need this for every person who needs to choose between food and medicine. For every person who cant financially handle a $500 emergency—40% of Canadians. For the parents who forgo their meds to let their kids play soccer–and for the ones who can’t play soccer because their parents need medicine. For every would be enterpreneur who could change the world but is stuck at a job because of benefits.

We need this to be a better Canada–that place where healthcare is a right because we take care of each other and we take pride in that. Except we stopped short, leaving patients who are still patients after they leave the doctors office often fighting to survive. We need more than “gap filling” solutions, we need Pharmacare for everyone, all the time.

Canada, we can do better.

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Do you have a story about inadequate access to medication or medication coverage in Canada? Please SHARE IT so others know why this issue matters. One way you can share your story is to reach out to my friend Bill at FacesOfPharmacare.ca. You can also send your story to your Member of Parliament (find them here), and most importantly, VOTE in October for a candidate who supports a true national Pharmacare strategy for all Canadians.

a dog lick your hands out of nowhere and rest his head on your leg. A conversation over coffee. Poutine, no matter how bad it might be for you. 11,359 steps on the Fitbit and counting. Excited hugs and high fives from kids. Coloured your hands pink with food dye and laughed, then fingerpainted with coloured pudding at work with three boys. A run in on the bus with a friend you haven’t seen in forever and you both jump off a stop later to go for Subway, a trip to Bulk Barn, and continue on to Toys R Us and Dollarama and CATCH UP. A silicone Lego ice cube mold arrive in the mail as a late birthday present. A million messages flying around about the plans for tomorrow and next week…

Back in February, I summarized the 2015 soundtrack so far. In reality, I didn’t add another new song until May—probably because other than travel, March was much a void, and in April I found more work and felt more of a semblance of normalcy—even just saying you have proper work plays into that—and as I’ll get into later, the stories for me happen in transition. I headed to Toronto at the end of April for goalball nationals, my first competitive coaching gig, and then returned in May for Clearing the Air. Then, it was off to Denver…

My Disease – A Skylit Drive.

awaken to the eyes of glazed humorthe haze in my somber eyes it burns so cold,the things you wish you could know

What I thought on those return flights from Toronto and Denver was this: Chronic disease sucks—the community that can arise from it, though, makes it better. If I didn’t have asthma, didn’t candidly share that experience, I’d be a much different person today—for better or worse. And, there’s humour in it that only “sick people” get, and a world that only we understand.

as he enters into the world,as a ghostthe terror inflicted scrapes your boneslet him hold you close.

[Look… where… over there… fear me] oh i see what you mean, step too closesee what i see—construct desire the fine line between disease and what i need

it’s exactly what it seemsthe horror i love, the evil that beats inside me:it’s called my disease.

All of the above: it’s a blessing and a curse. I may have friends and adventures gained from having messed up lungs and other sorts of shenanigans going on in my body, but I still face the reality that everybody with chronic disease does every day. I don’t know what that day will bring, I don’t know what the next hour will bring. Even when my health is stable, there’s still the lurking thought of when will the stability end? It’s not encompassing, but it’s still there. The community of people, the friends I’ve made, makes that tolerable—but even in the good, the amazing, there’s still a kind of evil inside my body that I have to make a commitment everyday to coexist with so that I can continue to own it. A choice so that “evil” does not crawl into my mind and make me more cynical than I already may be somedays, and more importantly, keeps me seeing my circumstance for what it is, rather than what it could be tomorrow. I somehow got a reputation for positivity, and damn it, I’ll keep trying. While everything I chronicle here is the truth, like I said in 2013, there are still “stories I will never tell”, or I will never tell in as much detail as maybe they deserve–there are some stories I’d rather forget—even though I can’t.

The possibility to do good, why the travel opportunities existed to an extent, counterbalances some of that. But it doesn’t make the other stuff suck any less.

Progress – MUTEMATH.

Progress was added to the soundtrack in about July, but really encapsulated April through August well. Work stuff started happening: I got a job with Tennis Manitoba (thanks for the recommendation, Sam!), as well as a more formal respite care provider position

pulling your confidence throughsome courage is well overduei believe solely in all your promisewhy waste a second in doubtyou could be helping outkeeping your head in the clear

I finally felt unstuck for a bit—looking for work is kind of depressing until stuff falls into place. Which can take forever.

[…]every moment of time’s just an answer to findwhat you’re here for, what you breathe forwhat you wake for, what you bleed for.

Certain things stick with you, no matter what, so every time I hear this song, I think of the above lyric, specifically “[…] just an answer to find […] what you bleed for”, and gently (usually) flash back to the whole situation of most of 2013, and, while maybe I haven’t figured out that whole effing scene, at least I can see how far I’ve come.

everyone’s counting on yousay for yourself what to dolife is a card that you lay down sometimesto search for the best way of allis finding the best way to fallkeeping your head in the clear

Sometimes I feel like I don’t know what direction I’m going. I wrote before that I was okay with this—now, I feel like I’m finding the best way to float, not necessarily to fall. Falling means taking risk, at least, means doing something—floating just seems passive. And I’ll admit it: some of the progress has been passive.

every moment of time’s just an answer to findwhat you’re here for, what you breathe forwhat you wake for, what you bleed for.what you hope for, what you live for,what you’re here for, what you breathe forwhat you live for,what you’re here for, what you bleed forwhat you live for…

Every minute I’m given is another minute to figure it out; another moment to make a choice to be mindful of even the most passive of things…

“A safe place to share your chronic disease secrets. No judgement. No shame. No stigma. Merely catharsis through honesty.”

I like this a lot.

Huge props to Chris for investing his time in setting up these projects.

Share your story. Even if nobody knows it’s yours.Or if that’s too hard, share. Just read, even.And keep going. If you need them, there are resources, people, who can help—even if you just want to type.

Diagnosed with learning and attention issues during my fourth (of five) year of university, I have said before that having my psychoeducational assessment done is one of the best things I ever did—next to that, was taking that next intimidating step to receive accommodations for the learning and attention issues that were brought to my awareness in a clinical fashion no more than 24 hours earlier. I have nothing but good to say about my experiences from that point forward receiving accommodations as a student with a disability. The other day, my friend Jenni posted on Facebook about her apprehensions surrounding taking the advice that she contact student disability services at her university.

While not intending to reinvent old posts (you can read those here), I’d like to summarize [or expand] the conversation I had with Jenni in the form of a hopefully usable rundown: of the help I have, or have heard first-hand stories of, people receiving from their post-secondary institutions, so that students with a variety of disabilities can consider for themselves whether or not these may work for them, and see if their campus offers such accommodations (or would consider adding them to their options).

Intimidation is normal.

Perhaps students who have been dealing with accommodations for their whole lives will feel more at-ease discussing their needs to university staff (I’ll be using the term university, but this applies to all post-secondary institutions)—or, it may be intimidating to move out of the familiar school system and into navigating the post-secondary environment. From my experience speaking with students newly accessing accommodations in university, these students can often feel very intimidated to take the first steps OR to self-advocate.

Self-advocacy (or, simply, sticking up for yourself and communicating what you need!) can be made more challenging with certain disabilities, or if a student don’t have much experience self-advocating. Accessibility/disability services staff deal with students with disabilities every day. If you don’t know what to say, that is okay. In my experience, I was simply asked questions so that it could be better understood what I might need to make my university experience more successful.

Bring Documentation

If you do one thing to prepare for your meeting with the necessary people on campus, bring documentation of your diagnosis. If you have a psychoeducational assessment report, bring that (they usually need to be done within the previous five years, but your campus may vary). If you have a chronic medical condition, or take medication that may affect your ability to learn, attend class, or sit in standard classroom seating, bring that documentation. They can’t help you if they don’t know what you’re dealing with!

Self-Advocate!

If you struggle to communicate your thoughts verbally (or freeze under pressure), you might consider requesting to make accommodation arrangements by e-mail, or provide a list to the person you are meeting with what areas you struggle with or ideas you have. Accommodations are meant to level the playing field, not provide an advantage. With that said, I have had a lot of success with trial-and-error: “Could we try [x]?” “I’ve heard this work for someone else in similar circumstances, is that an option we could try?”

Remember, it’s about you, but it’s about forming allies—we can be an important word! It’s always worth a try: the worst they can do is say no—and in that case, you’re not any further behind than when you started, you’ve just learned more about yourself, your circumstances, and what might be able to be done in the future if plan A doesn’t work out. (Look, my plan C for anatomy wasn’t even my plan and it’s the one that ended up working—be OPEN and people will be open to your suggestions, too!).

As well, it’s important to be as transparent as you feel comfortable with: student support staff are trying to help you, and they have probably heard everything before anyways. Anything you say will be kept confidential, and if—like many of us—you are feeling overly emotional surrounding discussing your disability or chronic disease, that is okay. I know that I am not the only person ever to have cried in our kickass accessibility advisor, Jess’s, office, and I’m sure someone else has cried in there since I last did, too. The last time I wrote an anatomy exam (my last anatomy exam ever) I was visibly shaken up and Jess invited me in to hear office to talk before the exam—when I declined, she said that if I needed to, I could leave the exam at any point and go see her or just take a walk. Yes, we often don’t want to be vulnerable, but that vulnerability was what I needed to push me through that exam, knowing I had the freedom to take a break if I needed to—and that I was supported. People supporting students with disabilities aren’t afraid to think outside the box—don’t be afraid to encourage them to!

My university provided letters of introduction to students for their instructors/professors upon request. These were meant to start the conversation between the student and the faculty member, and provide an official way to communicate which accommodations were in place for the student in a clear way, without divulging information about the student’s disability. I used these for most of my classes, and was grateful for their existence—it changed a really potentially awkward conversation to “Hi, I’m Kerri [I e-mailed you for the syllabus three weeks ago for my alternate format texts…], I have this letter of introduction from accessibility services outlining the accommodations I have.” If I felt it was necessary, I followed up a few days later, because I’m an open book, but it was rare anybody asked questions—they kind of can’t.

Common Accommodations

Access to Food/Drinks

If you have a medical condition that requires you to eat at regular times to avoid negative health effects, it can be arranged to allow you to have access to these items immediately (or in a timely fashion—as my friend Teigan pointed out, it may be hazardous in some classroom environments, and plans can be made for this).

Allergy/Sensitivity Awareness

If you have allergies to foods, latex, chemicals (etc.), sensitivities to fragrances, or asthma, your campus may have accommodations in place to assist you in mitigating these things. If they don’t, suggest that they start: signage can be placed on doors of classrooms students with allergies or sensitivities attend to inform people not to wear/use scented products in these areas; the same can be done for severe allergies to food or latex. My campus also had a bank of lockers that were peanut free; our accessibility resource centre also aimed to be an allergen (nut, fish and scent) free space.

Alternate Format Tests

Refer to the next point to see why the S is underlined!While it may be obvious that a student with a visual impairment will most likely not be doing a standard written test, it may be less obvious that there are a variety of formats they can use to complete the same test as their peers—including large print, computerized versions [text-to-speech technology and typed responses], orally through use of a scribe… etc.
Students who have trouble writing by hand due to learning disabilities or neurological/neuromuscular disorders may also use a scribe, type responses, or use speech-to-text software (ie. Dragon) to communicate their knowledge. For students with other learning disabilities, swapping long-answer responses for short answer questions or multiple choice might help to organize information better and help to communicate knowledge more effectively.

This is just a small sampling of test formats that may be available—which is why it’s important to talk with the people on your campus to see what they can offer you.

Alternate Format Texts

Far beyond the typical audiobook, alternate format texts can be both used to provide a different format for students with specific learning or perceptual needs, they can also be provided for students who struggle with turning pages, or cannot carry heavy textbooks. Alternate format texts can be digital, audio, or Braille; eText provides the advantage (in my opinion) of being portable using a tablet, and being searchable. As a student with a learning disability affecting my visual memory, it was recommended that I use audio books—I found that these books were too difficult to navigate—if I spaced out, I had a hard time finding where I’d been previously. Using the iPad, I set it up to highlight sentences as reading was occurring so I could find my place and easily scroll back if needed. With that said, some people might find audiobooks more friendly to their own disability: which is why options are important, and experimenting should be valued.In Manitoba, Alternate Format Texts are handled by Manitoba Education—if resources were already produced for students with disabilities, on occasion I had access to them without purchasing the physical book; other times I needed to have a receipt for the book, or provide the book myself to have the eText created (students who wish to have audiobooks in Manitoba that are not already produced need to provide two copies of the book for production), so it’s important to find out your school’s needs early on in the term so that production can begin—your late request is not their problem.

In general, some provinces/states and a variety of programs may cover textbook costs for students with disabilities. It’s worth researching.

Assistive/Adaptive Technology

Computer access is commonly available for students with disabilities who need access to adaptive technology through the university’s accessibility services centre. These computers can offer print magnification, speech-to-text and text-to-speech programs (such as Kurzweil). An assistive technology specialist may be available on campus to help you explore which options may be relevant to your needs.

Extended Time (Tests)

Some students may need extended time on tests for a variety of reasons, including learning disabilities, ADHD, slow processing speed, or physical disabilities that affect writing speed. Extended time may be also provided based on circumstance (ie. people with diabetes receiving additional time to compensate in the event of a high or low blood sugar, or students with disabilities who need test time paused and restarted to take breaks to stretch/move or use the bathroom to ensure they are receiving a fair amount of writing time.

I had flexibility in adjusting my time accommodations—I started off with 125% (ie. received an hour and fifteen minutes for every hour my class had), but eventually adjusted to 150 to 175% for some classes, and 200% for others—it took some trial and error, but I was fortunately supported through this.

Interpreters

Students who are D/deaf and communicate through signed languages will require interpreters during lectures and tests to ensure prompts are communicated. (For the rest of us, remember to look at the person you are speaking to, NOT their interpreter!)

Lecture Recording

Using a tape-recorder or laptop to record lectures allows students with learning disabilities to return to lecture materials at their own pace. [I used Evernote to take notes and record at the same time. When I missed points, I glanced up and jotted the record-time into my notes to fill in later.]

Missed Lecture/Test Support

See note-taking next. If you have a chronic disease that may require you to miss class due to symptoms, medical appointments, etc., access to supports from the instructor/professor, as well as notes, can be crucial to being successful. Make arrangements BEFORE you need them! In the event of an unexpected circumstance communicate with your instructors as soon as possible so they can help you catch up—being up-front, even without divulging too much information, helped me a lot when I got sick unexpectedly during two different terms. Meet with the instructor as soon as you are able so they can help you get back on track: most of them teach because they wantyou to learn—let them give you a chance. They can’t give you what you don’t ask for. Having a plan can also help you reschedule tests, extend deadlines, and help with group work—thanks to Rachel for these ones.

It’s also helpful to make friends in classes to share notes, study with, and, you know, have the occasional post-class eye-roll with.

Note-Taking

Many campuses enlist volunteer note takers for students who need note-taking support. This can be fantastic at best and horrendously unreliable at worst (or sometimes nobody volunteers—been there). Make sure you have a back-up plan, and if at all possible, try to take your own notes and use the volunteer’s notes to supplement.

Priority Registration

To increase the ability that students can attend class, students with some disabilities can register early for courses to avoid landing in sections that don’t jive with their symptom patterns or needs for accessible transportation. [Thanks to Teigan for reminding me of this one!]

Separate/Private Space for Assessment

Alongside alternate format tests, students who need it due to test anxiety, learning and attention issues, or medical needs, should be provided the opportunity to use alternate space for tests. Sometimes this means having students with similar testing needs writing in a room together, but among a smaller group (ie. 3-5 students who need a less distracting environment and also have an hour and a half to write a test); others it means having a completely separate space (with access to assistive technology if needed) to write in. I did much better with private space. This can also be implemented for certain in-class assessments [ie. lab quizzes] with adequate planning.

Seating accommodations can also be covered for tests (see next); additionally, my friend Riki has just shared that she now has a test accommodation to have dimmer lighting in her testing space (to quote: “because I like never really even thought that could be a thing but it is! And it’s fantastic.”)

Seating Accommodations

Students who need to should be able to pre-select seating for lectures. This can be for a variety of reasons, including vision, hearing and attention needs, but also for other reasons. When I was selecting seating, I would choose a front row seat, but by the door if possible so that if I was fidgety, I could slip out easily without disturbing half the room. Someone I know experiences anxiety when people are behind her, so she prefers to sit at the back. Students using wheelchairs will need a desk with removable seating; students with chronic pain may require different sorts of chairs to comfortably participate in class. Seeing the classroom and having a seat picked out and marked as reserved ahead of time can alleviate a lot of stress—plus it can be a great deal of fun when someone sits down at your assigned seat and is kind of being all “I wish I had assigned seating,” [maybe he had a need, maybe not…] it is kind of satisfying to be able to walk up and be all “Hi, I’m sorry, I need you to move” after someone is acting all cocky…

Study Space

At least before I made a bunch of friends, I found the Accessibility Resource Centre a great place to study (then all my new friends distracted me, but oh well). They also offered testing rooms as study spaces if they weren’t booked—ask around, especially if you’re on a crowded campus like I was. This may be less of a problem for people who live on campus (or in the US where campuses are often gigantic), but for commuters on small campuses like mine, study space is at a premium.

Tutoring/Mentoring

Whether directly through their university or through grants, some students have received funding to receive tutoring. At the local community college, someone I know says he has tutor coverage up to a certain number of hours per term, and then he has to pay. Investigate the options. If you’re new to post-secondary, I would also ask around with the student support people if you are thinking a mentor might be helpful to you—other students with disabilities themselves are a great wealth of knowledge—and fun.

Peer Support!

While not a formal accommodation, if your campus has an accessibility centre… USE IT! My campus had a few tables in a room and a computer bank for students with disabilities to use—I also met a ton of friends here, and had some of the best times I had at university in this room (…Shotput on the floor, much? Bringing cupcakes back from a cupcake run for the Accessibility Services staff, puppy playtime when my friend Gerry would let his service dog, Marcus, off his harness, seeing a business prof do a headstand—all of that and more. Sometimes disability perks happen, y’all!)

So yes, there are some unexpected bonuses—at least in my experience… but that could be because I am slightly a troublemaker? In a good way.

Make it happen.

Remember Riki up there—even if you don’t think it could be an accommodation thing, it possibly/most likely IS A THING. Don’t let intimidation or nervousness stop you—you can always quit accommodations if you really hate it (I don’t know why you would, but hey), but you’ll never know if you don’t TRY.

Have stories to share about being a student with a disability? Have tips to share that I’ve missed? [There are probably seventeen thousand.] Share ‘em below [or shoot me an e-mail if you want to guest post or just connect off the record!]